Patient portals are becoming important tools for engagement and population health, but patients are largely unaware of the technology.

While patients are generally enthusiastic about viewing their EHR data and engaging with their providers online, a concerning number of patients are unaware of the possibilities of using a patient portal, finds a new survey from Xerox. Among the 64 percent of patients who are not portal users, 35 percent did not know a portal was available to them, and 31 percent stated that their providers had never mentioned the technology to them. Despite the widespread lack of knowledge, 57 percent of non-users said they would be more engaged and more proactive in their own healthcare if they had access to their data online.

“With providers facing regulatory changes, mounting costs, and patients who increasingly seek access to more information, our survey points to an opportunity to address issues by simply opening dialogue with patients about patient portals,” said Tamara St. Claire, Chief Innovation Officer of Commercial Healthcare for Xerox. “Educating patients will empower them to participate more fully in their own care while helping providers demonstrate that electronic health records are being used in a meaningful way.”

The survey indicates a generation gap when it comes to how patients use online tools. While baby boomers are more likely to view patient portals as a utilitarian feature by making appointments online (70 percent), refilling prescriptions (58 percent), and communicating through emails with their physicians (60 percent), millennials view portals as an informational hub. Younger patients want to see personalized information (44 percent), tailored care plans, details about related services from their providers (44 percent), and industry news that might relate to their issues and concerns (23 percent).

Perhaps surprisingly, baby boomers, aged 55 to 64, were among the most frequent users of patient portals. Eighty-three percent of this age group indicated that they already do or would be very interested in communicating with their healthcare providers through a portal. Millennials were more likely to want mobile access to online tools, with 43 percent stating their preference for smartphone and tablet interfaces.

Providers can help to shape patient engagement – and help themselves to meet the 5 percent patient engagement threshold included in Stage 2 meaningful use – by taking the time to educate patients about their options and opportunities. Reinforcing the idea of signing up for a patient portal account at multiple points along the patients’ journey through the office, from check-in to follow-up, can help to secure a patient’s interest. And physicians themselves should take the lead, St. Claire asserts.

“Physicians just aren’t having that dialogue,” she said to HealthITAnalytics. “When we look at some of the best practices out there, we see that having that conversation multiple times along the patient’s path through the office is most effective. And we think having that conversation directly with their physician is going to be most important. People really want to hear it from their physician, because they’re that trusted source. Even as medicine is changing, having that talk with the physician is probably going to have the most impact.”

Patients should have the right to control their own healthcare and their own EHR data regardless of a provider’s opinions or disagreements, state David Blumenthal, MD, MPP and David Squires, MA in a commentary published in the Journal of General Internal Medicine. Even though some patients withhold critical information from their physicians or refuse to comply with treatments, clinicians are nothing more than “guests” in a patient’s life and must act with respect and understanding, the authors say.

The question of whether patients should be able to control the information in their electronic health records (EHR) provokes strong opinions, says Blumenthal, a former National Coordinator for Health IT and current President of the Commonwealth Fund. “Some argue that the information rightfully belongs to patients, and they should be able to decide what is recorded and who can access it. Some clinicians, however, argue that because they have a duty to provide their patients with the best possible care, doctors should have unfettered or nearly unfettered access to any information needed to meet that obligation.”

Blumenthal and Squires, a senior researcher at The Commonwealth Fund, come down on the side of the patient’s rights to make their own choices about the quantity and completeness of the data they share with their clinicians, as well as the access, use, and transmission of information stored in their EHRs.

As privacy and security concerns continue to affect the way patients view the use of EHRs, patients must be properly educated about data security, health information exchange, and the benefits of providing complete and accurate data to their physicians. Providing this education is a “considerable challenge,” the authors note, as many patients do not understand the details of how data is exchanged between providers or even what privacy protections are built into HIPAA.

While patients may have the right to withhold information based on these concerns, incomplete or incorrect data can have significant impacts on a patient’s health and wellbeing in unanticipated ways. “A patient’s decision to withhold data about a sensitive medication—such as a psychotropic or HIV-related drug—may have later consequences that neither patients nor clinicians could have anticipated,” Blumenthal and Squires write. “Beyond this, when evaluating a patient, experienced clinicians often rely on an array of data, including information not obviously related to the current problem, to raise and evaluate hypotheses about diagnosis and treatment.”

EHR developers are still working to refine and implement technologies that deal with patient consent for the sharing of specific pieces of information, such as HIV status, sexual orientation, or mental health diagnoses. Even when these capacities are more mature, the authors point out, there will always be instances when clinicians feel they must override a patient’s wishes in order to provide proper care or protect other patients from communicable or infectious disease.

However, Squires and Blumenthal caution providers who wish to assert their unrestricted rights to a patient’s health information that “if patients do not trust the health system to protect them, their relationships with their clinicians will suffer, they will withhold information, and the value of the health information contained in the EHR will be undermined. In the long run, clinicians as well as patients will benefit from a health information system that patients feel they can depend on to protect their privacy.”

As EHR adoption reaches the majority of healthcare providers and the tension over issues of consent, data exchange, and data usage become more complex, these questions will continue to prompt discussion among healthcare professionals on both sides of the argument. “Continued research on how to inform patients, support their choices, and understand the consequences for their care is essential,” the article concludes. “And while caution cannot be thrown to the wind, our prejudice should be to give patients a chance to express their views, and then abide by those as best we can.”

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